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Workingtogether

I recently made the difficult decision to not return to work. I put a lot of years into school and work to be able to have a job I love, working with kids and families. I hope to be able to return to work at some point. I’ve taken the past couple months off to try to see if I could find a leg I could wear and get stronger. What I learned was that my body is not able to do that. My brain still thought I could do everything. When I was working I would push through the pain every day which caused me to have to take so many pain medications. I would also use up few good hours of energy so I had nothing positive left to give my family. I would sometimes dread the nights the kids had sports because I hurt so much that I couldn’t imagine how I would make it through the entire night. I have learned to listen to more to my body and plan for more resting time which has allowed me to take a lot less pain medications and actually get to enjoy my family and their activities.

Before my amputation I didn’t have pain every single day for years at a time. Now every morning I wake up it is instantly there or why I woke up. Some days are better than others but I still have pain throughout the day and night. I have spasms in the end of my leg that bring me to tears that, come out of no where and doesn’t stop until it feels like it. I’ve realized that I don’t have a lot of control about my pain. My providers also don’t have a lot of options for me other than medications, supplements, trying another new liner and leg, coping skills and of course prayer. Even though I had times that were difficult with my foot it was only for a couples weeks at a time or I couldn’t do everything I wanted to do.For many years I was still able to play volleyball, go bowling, carry my kids, clean my house, go shopping and usually work as many hours as I wanted to. I have now had to completely change my life. Before I had to rest sometimes but now I need to rest everyday. I have to get up to get something or go somewhere I am constantly thinking about how I will get there. I haven’t walked unassisted in over a year and haven’t been able to wear a leg for more than a couple hours in 7 months. I have had to modify how I live and depend on others a lot.

This whole experience has opened my eyes up to injustices and barriers that I never had to look at when I had my foot. What I have learned to rely on is my faith, family, friends and my voice. I know that God has shown me that I need this break and that I have faith in Him that he will continue to lead me down the path He wants for me. It has brought me to a path of advocating for others, educating and sharing my story. I hope by doing this it will help show others living with disabilities that we need to all work together to make changes.

Businesses need to step up and make more changes because every year there are going to be more and more people living with a disability. If they don’t start making changes now they are going to be losing out on a ton of revenue from those of us living with a disability. Collaborating with others, sharing information and stories can be so powerful. It is amazing the changes that can be made when you can make the step to put your story out there.

I hope it helps change people’s perception and treatment of people living with disabilities. There are people in the world that are quick to make judgements and comments to people with a disability if they don’t fit what their perception of what being disabled looks like. I have dealt with this since I had my foot injury. Even now I get dirty looks when I pull into the handicapped stall and want to tell them to just hold on because when I get out and you see that I am missing half my leg then you won’t have to look at me like that anymore and may even feel bad for how you were looking at me. People living with disabilities get stared at a lot. Some days it’s easier to deal with than others. It is hard on my daughter especially to watch all of the people that stare at me throughout the day. I’m usually trying to make sure I don’t fall down or run into anyone so I don’t always notice it as much. Kids are typically good about it. They look very curiously or in shock and will often times come up and ask what happened. I tell them a short version and they say something like, “Oh, I’m sorry” or “OK” and move on. I always thank them for asking. Some adults will act this way but more often than not they will try to quick sneak a peek, which is actually more obvious and I actually notice that more. When I was able to wear my leg and had pants on it was more difficult to see why I was disabled so I would get asked often if I sprained my ankle or hurt my knee. Just as a recommendation if you choose to ask someone else or comment why they are on crutches, limping or even in a wheelchair be prepared for the answer. It can turn super awkward super quick if you say the wrong thing.

Just because you see someone with chronic pain smiling doesn’t mean they aren’t in pain. It could be that they are having a “good” day or that they are really good at masking it and don’t want others to constantly worry about them. Just because people take pain medications doesn’t mean that they are drug addicts or that they are part of the opioid epidemic. Most people with chronic pain wish they didn’t have to take any medications at all but if they do many are on a pain contract. They have to have their medications counted at every appointment and can’t take any more medication that they are prescribed and their counts be off or they run the risk of not being able to get their medications anymore.

People living with chronic pain and disabilities want to be able to do all of the “life responsibilities” like go to work, play with their kids and not have to ask for help with things. It makes it hard sometimes to not be envious of people that can use their bodies whenever they want to and can choose whether they want to play with their kids, go to work, shopping, or even to the bathroom.That is why it was a difficult decision to not go back to work for me. I know though that if I rest during the day then I can do more with my family and for my family without having to take so much medication. It’s mentally and physically exhausting living like this so even though it was hard and scary I had to trust that it is the right thing to do.

I have also realized that life is too short to not live it. This has forced me to make changes our priorities in our home life. Since my amputation we would often say things like “When mom feels better we will… or maybe next year mom will feel better and we can do…” Now we honestly don’t know if mom will ever feel better so we have to figure out how can we navigate life with mom not feeling good. It means having a scooter at home and one that can go in the car, having to check with places to see if they are handicapped accessible, figuring out how and where to rest, driving less, having more pillows in the vehicles and making sure that if my body is hurting that I rest and not just push through it. People may judge but we finally got to go to another state to watch the Brewers play. It was a lot of extra work making sure that everything was in place, I had to take naps when I wanted to be out exploring or laying down when I wanted to be up but we had so much fun. It felt so good to be at a baseball game again because we hadn’t been to one since my amputation and we used to go to a couple a year. We got to visit with family and a friend and for a long weekend forget about the stresses that we usually have to deal with.

Now that I know I need to rest everyday and being that I have had to be in a scooter or on crutches for so long, I have also learned that I will not be able to accomplish what everyone else can do. Instead I do the best I can, choose to not give up and I continue to have hope that I will walk again someday. It may not be here on this earth but someday I will walk again and be pain free.

I have changed my faith and become closer with God than ever before. I thank God everyday for the blessings he has given me like my husband, children, family, friends, a house to live in, cars to drive and food to eat. On top of that I always thank Him for helping me connect with my fellow pain/disability warriors that He has put in my life so we can share our stories and struggles and we can relate to what we deal with. I thank Him that it’s me going through this and not my children and that I am so blessed to not be fighting for my life. I pray for strength and comfort to get through the pain each day, for patience with others and the wisdom to follow what His plan is for me while I am here. I also pray for others that are struggling that they find comfort and support from Him and that they are not alone.

My family has also had to make a lot of changes in their lives. Jason already has the burden of providing and now it rests solely on his shoulders. He and the kids do so much for me every day and some days have to do way more than most husbands and kids their age have to do. I hope they know how much I truly appreciate even the smallest things and that I love them more than they will ever know.

Thank you to all of you that continue to send prayers, encouraging messages, call to check on me and still ask me to do things, even if I end up having to say no or modify the plans in someway. I hope it inspires others to make changes and continue to reach out to their friends and family members living with a disability. Finally, thank you to all of the new people I have met along this journey and I look forward to seeing what kind of changes we can make together in this world.

Like this:

Being 15 years old and having a disability forced me to look at the world through a different lens. Throughout the 19 years I lived with my foot there were times that I needed to use my handicap sticker and sometimes use store scooters. I would only use it if I needed it because there were times that I was fine to walk further, dance, play volleyball and go bowling.

After my amputation I have had to change so many ways of doing things, including a new disability lens. Now I live with a scooter in my home and my car, in case we have somewhere to go that doesn’t have one. I have a shower chair and can no longer stand to take a shower. God must have known I would at some point need these things and blessed us with the house that we have. My father in law built me a ramp so I can go and and out of my house. All of these things were supposed to be temporary but they are now an every day part of my life.

For the last four years, if I wanted to go to to a store I could only go to stores that had their own electric scooters or a store that didn’t involve having to walk very far. These mainly consisted of big box stores and grocery stores and that was only if there was one available. If there isn’t one available I would have to leave, stand on my crutches, or just sit and wait until one was available. I LOVE to go shopping, even if it’s just to look, so this has definitely made a difference in where I can go. It also explains why I can be in Target for hours at a time, if there is a cart available.

Over the last four months I haven’t been able to walk on my own. This caused me to have to change my life even further. Everything from going to work, pumping gas, picking up my kids from school and of course shopping. My disability lens also changed. I noticed one morning at our local Kwik Trip that they had a handicap sign on their gas pumps along with their phone number. It took my pride a few times but I finally called the number and it was so amazing to have someone come out and pump my gas and even get a pop for me. It sounds like a small thing but to not have to climb over the back seat to come out the back passenger side and then figure out how to get inside on crutches to carry a pop is a HUGE thing. It’s something most people take for granted. Then I started to look at other gas stations to see if they had something like it and so far I haven’t found one.

I started thinking about how nice it would be to just have an app that would tell you where the most handicap accessible places are and there really wasn’t much out there. There was one company that made films and did create a website to be able to allow others to rate the accessibility but it hasn’t done much in the past couple years. I tried to email the company to see why it didn’t work and even started doing my own research into how to get something like that going. I am a child therapist though and not a computer or app programmer.

After praying about it and asking God how he wanted me to help, I was led down a different path. After several months I was able to finally leave my house and go to a store. I was so excited to be there but I ended up getting really frustrated because I couldn’t get around where I needed to go and felt embarrassed. One of the team leaders saw me and talked to me about how frustrating that must be. It was so nice to have someone that worked there just acknowledge that fact. She encouraged me to write a letter to their store and let them know the struggles I have when I go there. Life got busy so I never wrote the store. I did return though about a month later. It was during the day so there wasn’t very many people there. I was excited to be there and get to take my time and look around because I had no kids with me. I started out in the women’s section and within 20 minutes I counted 25 times that I had run into the racks in the store’s cart. It was slow enough that there were plenty of people to come and ask if I needed any help with anything. One group I could tell were some sort of managers of the store. I joked with them how I had continued to run into things so unless they could change their store they probably couldn’t help me. I also told them about my experience at Kwik Trip and how amazing it felt to have a business make a change to make it possible for a person like me living with a disability. I continued to joke that I had several suggestions for their store but also informed them of how many people are unable to come to store’s because they are too many barriers to be able to come inside. One of the managers asked if he could follow me around the store the next time I came and if I had any suggestions that he would love to hear them.

This inspired me even more. I started doing more research and according to the US Census Bureau that there are 51 million people living with a disability as of 2010. That is nearly 1 in 5 people!! I had a list going of things that I thought would be helpful to have changed in businesses but I am only one person. That was when I was led to find out from other people what they thought would be helpful. I posted a question to every Facebook group I am a part of with other people living with a disability, which was over 200,000 members. I asked, “What would make it easier to go inside a business for those living with, have a family member or working with a person living with a disability?” The response was astounding. I heard from people that are fellow amputees, people that live with or care for people that primarily use a wheel chair, people with chronic pain, people with low vision, people with service animals and people living with disabilities that are more difficult to see on the outside. Through the research I looked up and all of the responses I received I made a checklist for businesses, of things that could be changed to make it possible to let all of their customers into their stores. I didn’t tell anyone what business wanted to meet with me because I didn’t want anyone’s answers to be biased.

A few weeks later I let the manager, Anthony, know that I would be returning to the store to get a few things and he asked if he could follow me around. I came prepared with my checklist and all my research to let him know just how many people are living with a disability and how many people could potentially be living with a disability by the year 2030. He followed me around and saw all of the barriers that I faced in the store that he never would have seen if he tried going through the store in the scooter. I also learned things about the store that I never knew were available. He also told me that they were planning to do a remodel at their store and that it hopefully isn’t too late to try to get some of these changes into their plans. I left feeling so blessed to be given the opportunity to show him what it looks like to look at the same store through a different lens.

I took the notes and information I got and put together a cover letter and a checklist with all of the suggestions that could be made and emailed it to him. This experience was amazing because it brought me to other people living with disabilities, other people advocating for those living with disabilities and a business that is willing to look at their business through a different lens. This wasn’t just a small local business. This business was Target, in Janesville, Wisconsin. Now the checklist and suggestions are in their hands and I can’t wait to see what changes can be made. As if I needed one more reason to LOVE Target!!!!!!!

About a week later I was tagged in a post on Facebook that there was a 12 year old boy on The Ellen Show that is in the process of making an app called The Ability App. I LOVE the Ellen Show already because of all the amazing things she and her staff do for others. I also LOVE that there is a 12 year old boy that is developing this app, not because he has a disability, but because he saw a man in a wheelchair trying to get into a business and how difficult it was for this man. The app is going to rate different businesses on how handicap accessible businesses are so that those of us living with a disability know whether or not we can come into their business. I was so excited that I sent him a message on Facebook to thank him and to share with him and his family the experience that I just had and the checklist that thousands of us had input on making. We still haven’t talked except through messaging.

This experience has also made me start reaching out to other disability advocates so we can all team up together so businesses step up and make changes so we can safely come inside. Obviously some changes require money to make the changes but some of them are small things that don’t cost a lot, if anything at all. Target was the first business willing to look through the lens. It has opened up the dialog though with even small businesses I go to like the dentist office and the chiropractor to show them how they could make changes to make their businesses safer and more accessible for everyone to come in.I can’t thank these businesses enough for this and thank God for leading me down this path.

There are many scared American’s right now with all of the changes going on with the government and healthcare. My hope is that together we can all team up to make changes together. I been inspired spiritually, through working with others and reading what others have written and watched what others have done. I hope that together we can inspire others to make changes so we can live in a world that gives us the ability to get around a little easier.

Let’s promote these businesses that are willing to make the changes to let all of their customers inside. Use the #WillYouLetUsIn

Anyone that wants to use the checklist with a business in your community send me an email or I will be posting the checklist soon.